Burnout in Aids Care: A Psycho-Spiritual Crisis

By Marianne Tavares, R.G.N. R.M.

The use of the word “Burnout” in relation to human beings is a 20th Century “social and psychological phenomenon” (Sanford 1982:3). It has been described as “a time when day-to-day functioning was not a problem, but the fatigue felt could only be described as ‘deep, deep tiredness’ which no amount of sleep changed”. However, burnout can range from a degree of dysfunction to total intellectual, emotional and spiritual exhaustion. The experience therefore can be said to be a crisis in a person’s life. In popular imagery burnout, as depression or “breakdown”, is often seen in a negative light. However, reference to the Chinese term for “crisis” (wei-ji), meaning both danger and opportunity, has been acknowledged by many writers and, seen as such, burnout need not be a purely negative event, however painful it is for the person.

Burnout in the human services is much easier to observe and to describe than it is to define. Rest will only restore energy temporarily and it is far more important to discover the energies within us that we have not yet used. Burnout is many things and many people. “It is virtually impossible to prevent burnout which will happen, perhaps repeatedly, in a person’s career and must be dealt with on an on-going basis”. (Edelwich and Brodsky 1980:14). This implies that dealing with burnout involves looking at the whole person, because “carers are seldom just the innocent victims or negative factors beyond their control, they are also the secret contributors to their problems because of their own hidden egocentric attitudes!” (Sanford 1982).

Why AIDS Care Is Particularly Vulnerable to ‘Burnout’

The issues that confront people with HIV/AIDS are not new, but their intensity can be attributed to the fact that no other illness brings these issues so instantly to the surface for the client, carers and society. They include sex, sexual orientation, drug use, young people dying, disability, possible disfigurement, rejection, fear, secrecy, guilt, and living with uncertainty.

“HIV/AIDS reminds us that there are limits to the satisfaction that comes through sexual intercourse. Sex never yields all that it promises – the challenge is to be glad for what it does yield, and also to acknowledge the gap and live in its tension, with its reminder that all our unions arc transient” (Cotter 1987:29). There is so much symbolism in AIDS – symbol of our vulnerability to death, and the puritanical values in relation to sex that have been conditioned in us. A lot of people who are reacting to having AIDS or to others having AIDS are in part reacting to this symbolism (Dass and Levine 1980). All of the above raises questions for the carer, quite apart from the pressure resulting from other people’s reactions.

To date there is no cure for HIV or AIDS and once infected with HIV a person carries this life-threatening virus for life. “HIV/AIDS nudges us to come to terms with death” (Cotter 1987:29) and shows up clearly what our attitudes are; it forces us to choose. If we choose

– to embrace and to care
– to be compassionate out of our own struggle to be whole
– to bear complexities and unresolved questions
– to welcome the gifts of those who are different
– to touch and allow our hearts to go out to those who suffer
– to live with the fact that we can discern no meaning to this illness

then we enter into the world of HIV/AIDS. People with AIDS are faced with (Nugent 1989):

– questions such as “Why me?” and the range of emotions that follow this question
– weakness, pain and vulnerability
– dealing with family
– the special need for friends
– how to respond to care-givers
– fighting discouragement at times and even despair
– giving witness
– loss and death

The extent to which we have not faced these deeper issues is the extent to which working with persons with HIV/AIDS will churn them up for us. Thus the sufferers’ issues will, at some point or other, become our personal issues too.

Vocations in the human services are characterised by several built-in sources of frustration that eventually lead many dedicated workers to become ineffective and apathetic. This has been described as the Burnout Cycle (Edelwich and Brodsky 1980) and applies to AIDS care. Burnout can be considered as a cycle/stages of disillusionment, enthusiasm, stagnation, frustration and apathy.

Enthusiasm

In looking at the question “Why people become helpers” we have to acknow­ledge that with the genuine desire to help people arc two less conscious motives, that of the desire to learn about oneself and the desire to exert control. This would be a particularly important question to be asked of those who enter AIDS care where there is a disproportionate number of carers to the number of clients.

Awareness of our motivations can not only prevent us from acting out of our own emotional imperatives at the expense of clients, but enable us to use our emotional investment in the job as the basis for insight. Otherwise, in the initial stages of enthusiasm it would be easy to slip into the cycle of expectations, unlimited commitment and over-identification which all lead to eventual disillusionment. On-going personal development and the role of clinical supervision can contribute immensely towards focusing on clients’ issues (as distinct from the carer’s) and developing a degree of realism without the total loss of idealism and concern in the face of personal limitations and the complexities with which AIDS presents.

Stagnation and Frustration

Stagnation is described as a “revolution of unfulfilled expectations”. When clients have repeated relapses, problems cannot be solved, or when we discover that our colleagues’ expectations do not match our own, self-protection from the disappoint­ment encountered and the impossibility of remaining vulnerable to it can lead to a loss of the momentum of hope and desire that brings us into AIDS care.

If left unexamined, the lack of enthusiasm attached to stagnation can turn into frustration. On a functional level there is a proliferation of agencies, more than in any other field of care, that offer help to people with HIV/AIDS. As such, there is often much overlap and confusion. Management, organisational and communication inadequacies, compounded by internal and interorganisational politics, all serve to pressurize and frustrate staff at all levels.

In the uncertain and rapidly changing world of AIDS there is a need to develop holistic yet functional criteria for measuring achievement. This means regarding individuals as being “made up of body, mind, spirit and emotions interacting in a social context” (Turning Point 1992), and understanding what health means for each individual as a whole.

Frustration generates energy and how this is utilised is a deciding factor as to whether we decide to get out of the cycle by channelling the energy created in a constructive direction, by taking responsibility, confronting issues and taking action that may bring about change. In other words, frustration can either be a ‘springboard’ out of the burnout cycle or it can lead to apathy: the final stage of burnout.

Apathy

The dynamic in the stage of apathy is a growing disillusionment with the job, together with a growing dependency on the job for survival. This is characterized by a progressive emotional detachment that is not the optimum level reached through supervision but a kind of numbness, ‘turning off’ to people’s needs. The cycle of emotions that leads down the road to apathy is anger, leading to attempted remedial action, recognition of failure, futility and then indifference.

Apathy is a collective as well as individual experience, although different people and groups have their own ways of expressing it.

Effective Change/Dealing with Burnout

Dealing with burnout requires that we break out of the cycle of disillusionment. The steps taken may be conscious or unconscious, they may be a temporary stop gap or a real change. The energy required comes from frustration, anger etc., and can be used positively. Remembering that burnout is difficult, if indeed impossible to prevent, the question to ask is how to develop a greater awareness of where we are, how we are and what we are doing, so that we can choose to live and do things differently.

Overwork

We need to raise questions when we find ourselves constantly working overtime. Are we afraid to spend time with ourselves, or are we avoiding staying at home to avoid relating in difficult situations? If we do not pay the price of creatively examining ourselves, then we may later pay the price in exhaustion, broken relationships or the feeling that we have not lived our lives fully. To be whole we have to attend to that part of us, body, mind, emotions or spirit, that our work and other activities are not touching.

When we find that our work is repetitive, the wearing effects can be offset by ensuring that some aspect of work or leisure is fresh and new. The resolution of repetition requires originality and creativity.

Looking After Oneself

When working so closely with uncertainty, death and dying, the need to look after oneself cannot be over-emphasised. This can range from ‘having a drink or a laugh’, availing of psychotherapy, to learning to sit and get in touch with the healing life force within each of us.

The role of the therapist in cancer (Walsh and Good 1992:5) has been aptly identified but it applies in the context of AIDS care too:

– to enable the person to acknowledge and express whatever emotions the illness and its various treatments arouse in them and in their families/those around them.
– to enable the person to explore life events in the near or distant past which may have helped to weaken the person’s inherent resistance to illness, both through the effects of the events themselves and as a result of the ways in which the individual dealt with them.
– to identify patterns of behaviour or ways of being which are not healthy for the person and to work with them on how they can change these towards a healthier lifestyle.

Expectations

When dealing with people’s expectations it is important to be aware of the network of different agencies in AIDS care and to develop a trusting relationship with the clients whereby referral to another agency is possible. We need to be honest about our limitations, and clients in the long run will respect us for it.

Failure?/Attachment to Results

In AIDS care we need to be aware of what constitutes failure. This is a spiritual matter and, if we feel that we are failing, we need to look closely and objectively at our situation. We need to “cultivate that space around the stimulus that is making us burnout, work with the essence of the self, the depths of our being which is more than our body and our senses” (Dass and Levine 1980).

Attachment to results burn us out. This comes from a belief that it is not us, but God alone (or the Universe, the Transcendent etc.) who knows the results or the reasons. Rather, let us do something to the best of our ability and believe that “what effect it has, will be what it will have” (Dass and Levine 1980). Can we let go of our expectations when we become aware of them, and examine the ‘model’ that we have in our minds as to how things ‘ought’ to be, so that we can choose to be free of it?

HIV/AIDS arouses tremendous anger in us, and this anger blocks healing. It is important to investigate this anger, otherwise it burns our heart, makes our pain inaccessible and we turn inwards. As with all pain, we need to start to touch this pain with mercy, loving kindness and not hatred. Perhaps the greatest challenge and potential in HIV/AIDS is to face the fact of society’s fear and negativity. The greatest gift we can offer another is our freedom, our openness.

Conclusion

The solution to the problem of our deeper exhaustion is to undertake, in religious language, a spiritual pilgrimage or search for God and, in the language of the modern depth psychologist, individuation or the search for wholeness (Sanford 1982). The process of the self becoming whole has to do with the self becoming aware of its interconnectedness and then living in ways that nourish the relationship between self, others, God and the world (Zappone 1991 a).

We must acknowledge the healing and spiritual potential particular to the AIDS crisis, which points to the path that will take us to renewal. We can then walk that path ourselves and make our own discoveries. Burnout in AIDS care is a psycho-spiritual crisis which offers us the opportunity for growth if we but choose it.

Marianne Tavares is a nurse who has worked with people with HIV/AIDS in hospital and in the community in London.